Living with lymphedema: helping others with the disease

Karen Bingham gets a lot of weird looks. She’s used to it now; people have been staring at her legs for decades.

She usually covers them up. Now, she’s putting them out there.

Bingham has started her own campaign to get the word out about Lymphedema, the disease that has left her legs swollen for 36 years.

Bingham, 48, is organizing her own lymphedema seminar. The first one is March 5 at Acadia Hall in Lower Sackville, N.S. She posted an ad on Kijiji that has gained almost 1,500 hits.

It’s taken a year to work up the confidence to talk publicly about her legs.

“It’s almost like somebody is inside of my legs, pounding with hammers, trying to get out,” she said.

Lymphedema is a throbbing, aching, and sometimes stinging disease that swells the arms, hands, legs and feet. It’s caused by a buildup of lymph fluid that’s not properly flowing through those parts of the body.

When Bingham hit puberty her legs began to swell. That was in the 1980s. “People made really rude comments. So that was the last time I wore a mini-skirt,” she said with a laugh.

The thing is, she still hears those comments today. Bingham describes the last time she wore her bathing suit and went swimming. “An older lady said, ‘You shouldn’t be here. You shouldn’t be allowed in the pool.’” Bingham was stunned.

When Bingham tried signing up at Goodlife Fitness in September 2011 she says she got shot down because she didn’t have the right shoes.

“I was really upset because a lot of my friends were going there for zumba and things like that,” she said. “I only wanted to go for a class with my friends.”

She recently called again for a membership and was denied.

When asked why, Goodlife Fitness spokesman Adam Roberts wrote in an email, “If a physician provides approval for an individual to participate in an exercise program, we are more than happy to welcome them in our clubs.”

Bingham has since found another gym — Manimal Athletics — where she can exercise.

When Bingham’s not at the gym wearing exercise clothes, the real estate agent is at work, wearing a long skirt that drapes to the floor. It’s not because she’s embarrassed.

“I don’t want that to be the first thing people focus on with me,” she said. “The minute someone sees my legs they’re like, ‘Sit down! Sit down!’”

Bingham can’t wear regular shoes either. She has ones that are specially made.

No guaranteed fix

Lymphedema has no cure. But treatment is available.

Terry Kemp is a massage therapist in Halifax who specializes in lymphedema. He’ll be going to Bingham’s seminar.

Kemp says he sees five clients daily, and sometimes three or four of them have lymphedema.

“I’ve been trying to increase awareness amongst physicians and other health professionals in the public because lymphedema is largely misunderstood,” Kemp said.

Kemp uses a special type of massage therapy, called manual lymphatic drainage (MLD), to get lymph fluid flowing in the arms and legs. He’ll then wrap the limbs in bandages to reduce the swelling. Once the limbs shrink, patients will then wear a compression garment. This treatment lasts two to six weeks.

He says the treatment has a high success rate too. “Very rarely do I run across somebody who’s not responding well.”

MLD didn’t work for Bingham — her legs have had the disease for too long — but she encourages others to try it.

A family affair

Lymphedema runs in Bingham’s family. Four of her sisters and two of her brothers have the disease. Her father had it as well.

Bingham’s niece, Taff Cheeseman, also has lymphedema.

“My legs feel heavy,” she said.

Cheeseman is in the military. “I find it’s difficult maintaining my job because of the pain I have in my legs.”

Cheeseman has to get combat boots three sizes too big because she can’t use boots off the shelf.

“I’ve never been lucky enough to not have (lymphedema) so I’ve always thought it was just a normal thing,” she said.

Cheeseman is proud of her aunt for going public about her legs.

“You take something positive out of the negative and run with it,” she said.

Bingham plans to host her lymphedema awareness seminar every year.

Lymphe-what?

Lymphedema is the swelling of arms and legs caused by the buildup of lymphatic fluid. The fluid isn’t flowing properly through the limbs.

It can affect anyone — women, men, children.

Bingham has primary lymphedema. That means she was born with a faulty lymphatic system. Secondary is when the lymphatic system is damaged from surgery or radiation, mainly because of cancer.

There are several symptoms to watch out for: sudden swelling in one or both arms and legs, clothes feel tighter without any weight gain, skin feels thicker, and aches in the arms or legs.

If you spot the signs of lymphedema, see a doctor. They can do two tests: a Stemmer’s test and a pitting test.

The Stemmer’s test is when the skin at the base of the second toe or middle finger is pinched. If you can grab a skin fold that’s thicker than 3 mm then this may be a sign of lymphedema. A skin fold of 2-3 mm is fine though.

The pitting test is when a finger is pressed into the swollen area for 30 seconds. If the finger leaves an indent for a while, this is considered a sign of lymphedema.

Source: Canadian Lymphedema Framework

2 comments

Way to go Karen. I hope you get a great turnout at your seminar. The more people who learn about this the better. Unfortunately there will always be ignorant and rude people out there who will try to make you feel bad. You should feel very proud of all of your accomplishments and of the aeareness you have brought to this disease. It will help so many more people